1. From history
In the UK, there is a famous saying to describe a doctor's work: "To cure — sometimes, to relieve — often, to comfort — always." For a long time, the latter part of it had hardly attracted attention and had been overlooked.
It was Cecilia Sanders, a nurse and social worker who took on the job of extending care for the dying, who began to restore the balance. As a student, she inspired me, and I began collaborating with her in the 1970s.
In 1991, in what was then still Leningrad, Victor Zorza organised two-week courses on palliative care, of which I was an expert.
2. Defining the concepts
Palliative care is comprehensive support provided to patients with incurable and progressive illnesses and to their families. In recent years, this field of medicine has been undergoing active development. In 2017, The World Health Assembly recognised the need for palliative care within healthcare systems.
The following definitions of key concepts demonstrate the difference in approaches between biomedical care and palliative care:
In the UK, there is a famous saying to describe a doctor's work: "To cure — sometimes, to relieve — often, to comfort — always." For a long time, the latter part of it had hardly attracted attention and had been overlooked.
It was Cecilia Sanders, a nurse and social worker who took on the job of extending care for the dying, who began to restore the balance. As a student, she inspired me, and I began collaborating with her in the 1970s.
In 1991, in what was then still Leningrad, Victor Zorza organised two-week courses on palliative care, of which I was an expert.
2. Defining the concepts
Palliative care is comprehensive support provided to patients with incurable and progressive illnesses and to their families. In recent years, this field of medicine has been undergoing active development. In 2017, The World Health Assembly recognised the need for palliative care within healthcare systems.
The following definitions of key concepts demonstrate the difference in approaches between biomedical care and palliative care:
The objectives set by palliative care lead to the inclusion of new areas of knowledge and tools in this field of medicine, enabling comprehensive support to be provided to patients at the end of life.
3. Principles of Palliative Care
Palliative care encompasses three key concepts - NON-ABANDONMENT, partnership, and rehabilitation.
The primary meaning of the non-abandonment principle is to keep patients feeling that they are important and that they matter until the last minute of their lives. The feeling of abandonment can arise even in the presence of others, for example, when healthcare professionals perceive the patient as an object of their efforts. This can evoke a sense of humiliation and tragic loneliness in a challenging situation.
The feeling of abandonment plunges the patient into isolation, giving rise to fear and despair, ultimately resulting in a sense of hopelessness. Not being abandoned is the primary foundational hope that sustains the patient's will and mindset. The doctor has to ensure that the feeling of abandonment does not arise.
Communication and teamwork become the connecting links between the principles of non-abandonment and partnership.
Communication serves as the primary tool of partnership. The importance of explaining the situation, listening to the patient, identifying priorities, and assisting the patient in making decisions must be emphasised. Expert partnership emerges with healthcare professionals regarding the illness and with the patient's family regarding the impact of the disease.
Sincere communication based on openness and understanding fosters trust, the cornerstone of working with patients and their families, enabling support built on relationships.
Teamwork is critical. Typically, the team consists of doctors, nurses, social workers, therapists, and volunteers who are often involved in the work. Forming such an interdisciplinary team may encounter some changes as much depends on funding principles. For example, in the United Kingdom, state funding is supplemented by charitable organizations, which allows for an optimal team configuration.
Doctors and healthcare professionals working in a team should have a versatile understanding of psychotherapy since palliative care requires thoughtful psychotherapeutic work rather than just treating physical symptoms. Identifying sources of fear and establishing priorities is crucial, as this process differs from the traditional medical approach. In my practice, I have almost always used open-ended questions. For example, what do you expect from the consultation? The answers can relate to symptom relief (pain relief or reduced shortness of breath) and the patient's emotional well-being (preserving their identity and emotional tranquility). One of my patients specifically mentioned keeping emotionally calm. In response to my question about what he meant by emotional calm, he stated that it was vital to know that if his condition deteriorates, he can go to a hospice to avoid burdening his landlady. Fears and priorities are highly individual and require open and sincere conversations.
The role of volunteers in working with patients is highly important. Volunteers can provide various forms of assistance in both outpatient centres and hospices based on their knowledge and skills. Volunteers help overcome isolation from society and the preoccupation with internal processes. In the UK, hospices are perceived as "ghettos for the dying," and volunteers help change this perception.
Symptom management and psychosocial support are the two wings of rehabilitation that enable patients to express themselves fully until their last moments — allowing people to live as fully as possible until their final day is crucial.
Symptom relief undoubtedly improves the patient's condition, but it is essential to remember that all symptoms are psychosomatic and require a comprehensive approach. Total pain encompasses not only the physical state but also psychological, social, and spiritual suffering. Various tools need to be employed to address it.
Symptom management consists of several stages: assessment, explanation, treatment, observation, and attention to detail. The assessment is crucial as it engages the patient in the treatment process and promotes a more meaningful adherence to the doctor's instructions. I also want to highlight the stage of observation. In palliative care, it is essential to constantly monitor the patient's condition and its changes and revise treatment plans as frequently as possible. Attention to detail is a golden rule of palliative care.
Accurate pain assessment is crucial for determining the most effective set of measures for its alleviation. Identifying the causes of pain and its sources should be approached with great care. For a more in-depth exploration of this topic, I recommend reading the article on the somatopsychic nature of pain.
(https://palliativemed.sechenov.ru/upload/iblock/205/d92eekz6z7n9s2bx0g3v8w55wkotjnlu.pdf)
Every professional should be highly attentive to details, asking themselves questions about symptoms and the sufficiency of the effects on them.
Palliative patients often require a wide range of pain management, where it is crucial to accurately assess and consider all symptoms to develop the right pain management strategy, including the combination and dosages of medications. When choosing a plan, all symptoms must be considered to accurately select medications, their dosages, and combinations.
In conclusion of my speech, I want to talk about spirituality. I'll provide a definition that, undoubtedly, cannot claim to be comprehensive but will help better understand its influence in palliative care. Spirituality is the meaning and purpose in a person's life, connection with themselves and others, nature, and the transcendent/God. It is essential to distinguish between spiritual and religious experiences. The latter is undoubtedly important but is more associated with dogmas and rituals. Spiritual experience is a personal perception that requires discussions about important matters such as the meaning of life and death. Kindness and active listening lead to accepting the statement, "you matter because you are you." Identifying spiritual distress is a crucial task in palliative care. It is necessary to discuss what concerns the patient the most at the moment, what can provide maximum support in a difficult situation, and whether belonging to a religious community and/or faith helps the patient through a difficult time.
Paradoxical as it may sound, doctors need to accept their helplessness in the face of the illness — patients understand that doctors are not gods; they need someone to be there for them. Compassion entails not only seeking solutions but also being ready to stay by their side even when no solutions are available.
So, palliative care is:
- Simple technologies and high expertise — no matter what tools you use in your work, you must do it skillfully.
- Understanding urgency — a patient experiencing severe pain cannot be asked to come back next week. The problem at hand must be addressed promptly.
- The essence of intensive therapy and intensive care — should be understood and always kept in mind.